HDSA 2015 Convention: An Experience

When I was a little, I remember running around my grandmother’s house, squealing with excitement at the news that we were going swimming the next day. I ran up the stairs, rushing to set out my suit. As I reached the doorway and stepped inside, something cut my happiness short. It was like someone had a pair of scissors and just decided to snap the wire that lit up my soul in half. I remember thinking that I wanted to die. I was four years old.

Now, at 22, I have recently learned more about my curse.
I tested positive for Huntington’s Disease at 21 years old, and so my fears were confirmed: on top of all the pressures of figuring out college, plans for the future, and my social life, I also had to learn about how to keep my depression,
anxiety, and paranoia under control.

I literally thought that my life was
over.

As anyone knows who keeps up with me, I am the first one to attempt the
romanticization of all my woes, putting everything that hurts me into the form
of iambic parameter. Always hurting, always falling, and always attempting to
lift myself up (and mostly failing). For the most part, I gave up. No one could
understand the pain I was in.

Until this past weekend.

Earlier in the
year I had become a part of a group called the Huntington’s Disease Society of America, and, on my own time, had learned everything I could about what they considered themselves to be. Their logo included the phrase “Team Hope,” and in all honesty, I scoffed at the idea. It was too familiar, too cliché. So, I lived
out the rest of the year in solitude.

When the time came for our
convention, I decided to attend because all of my expenses were paid by them,
and who would pass up a free weekend in a nice hotel? Not me. So I went,
expecting to lay low and hide out in my room, using up as much of their air
conditioning and hot water as humanly possible.

On the first night, dinner
was freely provided, and I wasn’t about to pass that up. I grabbed a plate as
quickly as I could, sneaking back up to my room and spending the night about how
I had imagined: laying in bed, watching TV, and eating, alone…which was how I
liked it.

I spent much of that night staring starry-eyed out of the wide-set city window, wishing that I could morph into one of the sparkling urban lights. I hadn’t slept with a night light since I was a young girl, but tonight, I let the light from the Dallas skyline puncture the darkness that enveloped my lonely hotel room. I stayed up for most of the night, devouring every bit of the illuminated night sky in a white washed solitude that I wouldn’t soon forget. I was content in that moment, to say the least.
Morning came much too soon, and I could feel a headache setting in when I remembered where I was (or more like what I was there for). I just wanted to stay cuddled up in bed all day and stare longingly out of my window, but something that day coaxed me out from under my warm sanctuary, placing my feet on the ground and dragging me downstairs to one of the HD sessions. This one was over “coping mechanisms,” and I snuck in the back door just late enough to snag a seat on the floor in the very back. I honestly didn’t spend very much time paying attention, at least not to the speakers. Instead, my focused shifted to the people in the room. I studied each individual (as much as I could from my view in the back), scanning their faces, their eyes, and their reactions to the words that were being spoken. Some of the audience wore their hearts on their sleeves, and I could see through the window of their eyes that the burden they carried was almost unbearable, yet here they were. Others looked happy, nodding their heads every few seconds to signal that full attention was being given. I even saw a few familiar faces from people who had reached out to me when I had first tested positive.
I wondered what people saw when they looked at me. I hope it wasn’t the truth.
After the session, the few people I knew did not hesitate to greet me with a hug, exclaiming about how glad they were that I had come, how I needed to come to this session and that session that they would save me a seat at lunch. I was overwhelmed to say the least, but my heart fluttered with gratitude at the thought of people I barely knew caring so much.
Throughout the day, I followed a few of them around, attending sessions on volunteering, relationships, the decision to test, all the while being introduced to more people than I could ever remember becoming acquainted with in one day. Some of my new friends spoke in the sessions, crying when their stories took a turn for the worse, laughing when reminiscing on the moments when time stood still with their loved ones, sick as they were., and although the experiences shared differed greatly from the other, they all maintained the same theme: Hope.
I found myself crying and laughing with them.
The rest of the weekend, I opened up to people I barely knew, but they understood my pain better than any friend I’ve ever had because they had experienced it firsthand. And I listened to their stories, my eyes flickering with empathy at the mention of the sickness that haunted our lives. In less than two days, I had a brand new family, and we helped carry each other’s burdens.
The last night of our stay, all four hundred of us attended that HDSA gala, enjoying each other’s company for the last night of the year. We were all given a blue glow stick, and, one at a time, broke them in honor of our loved ones who suffered before us,for the caregivers who put their lives on hold for the sick, for the people fighting to find a cure. The whole room was lit up by hundreds of blue hues, and I finally broke down my last wall, setting myself free in the form of giant tear drops that trickled down my cheeks. I was instantly surrounded by people who hugged me, told me they loved me, insisting that I was never alone.

And now, I know for sure.

After this amazing weekend, I am certain that everyone who has suffered in any form from this awful disease is stronger than the ordinary person. We have our “normal” problems just like everyone else, along with the weight of HD. Our strength can be found in the midst of our sorrows, and I have never before seen a community of people so tightly intertwined that you can’t tell family from friends. We are each other’s source of inspiration, and together, will will continue to fight this disease.

There is Hope after all.

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